Our Experience . . . (continued 4)

As I mentioned in my previous blog, it was in third grade when my son started falling behind in school.  It is also when he started to have some unusual movements and vocalizations, which may have been Tourette Syndrome or Non-epileptic seizures. 

After the school year for third grade was done, I got my son a tutor, which was his second grade teacher who he truly loved.  She worked with him on reading and actually got him advanced up two levels on leveled books.  Keep in mind I paid to have this tutor, which we did two summers in a row.

For fourth grade the school put my son into Special Education for both reading, language, and math.  The remaining classes were in his mainstream class.  After about two months the special education teacher wanted to meet with me.  In this meeting, which also included the Principal and the school social worker, their big complaint was that my son was having too many tics.  My reaction was “And so?”  We had been doing everything we could medically.  We had tried medications with no success.  My son was also seeing a neuropsychologist every three weeks. 

The second complaint was that my son needed guidance from the teacher in order to do his work.  Hello!  He’s in Special Education!  Isn’t that one of the principles of Special Education.  She also said that if she gave direction involving three different things.  He would follow through on one of them and then stop.  He could not remember the remaining two things.  She also complained that he could have gotten clues by looking around at the other five children in the room, because they were all doing the same thing.  Instead he would just sit there doing nothing.

I wasn’t surprised by any of this.  This was no different from what we experienced at home.  Over the years we learned to compensate for this without even knowing we were doing it.  We only gave him instructions one at a time.  There were somethings that we just didn’t ask him to do, because it would take too long, especially on busy mornings as he got ready to go to school.

Finally in this meeting the school suggested that we shift my son to a new room that had fewer children in it and could get more attention from the teacher.  The odd thing was the teacher was actually the social worker in the school.  She had no background in teaching special education.  This decision turned into a big disaster.  My son was then stuck with this woman through fifth grade.  We talked about teaching him “touch math,” which they only did for a couple of weeks and then went back to the one minute timed drills.  End result more tics.

The biggest problem with her was the fact that she punished him for having tics.  She gave him no privacy when he was having a bout of tics.  She expected him to be able to continue working as he was having the extreme movement tics and vocalizations.  Probably the most debilitating aspect of her teaching method was that she had no empathy for his circumstance. 

Toward the middle of third grade I read in the school newsletter that they were going to offer reading tutoring for kids and it indicated we would be getting additional information about this in the near future.  I was really excited about this because my son needed the help.  At the time he was almost two grades behind in reading.  So I waited for the second communication.  I waited, and waited.  Finally I reached out to the principal.  He responded that the program was done and was limited to a select number of kids.  I was furious.  He admitted this was an attempt at increasing their test scores for reading.  The only students that got tutored were students who were on the border of being behind in their grade.

My response to him was he had better watch out, because he is going to get sued.  Here I had been paying for a tutor which was an expenditure I could not really afford.  I was obvious my son needed help.  I told the principal that he was discriminating against my son.  I could tell he was not prepared for this reaction from me.  In the next year they had this tutoring program again and my son was invited. Now I don’t know if he got his equal fair share of tutoring, but he wasn’t excluded. 

Continued. . .

Our experience with non epileptic seizures

When my son was in third grade he started to have these unusual movements, which later also included vocalizations.  The movements became so severe that my son was not able to go to school because the incidents would continue for hours and hours.  Typically they occurred in the night, which in turn deprived him of sleep.

My son also has myoclonic epilepsy, occurring in the frontal lobe, and upon observing and conducting an EEG, the neurologist indicated that the movements did not have the characteristics of epileptic seizures.  He concluded that they were non epileptic seizures.  We then began work with a neuropsychologist regarding how to deal with this unusual activity.

After I got the medical community working on the seizures, I also had to deal with my son’s school  My concerns with school was that I didn’t think they would be able to deal with these events while providing a safe environment to continue his education. Eventually, I took my son to school.  They were shocked about what was happening.  My son went to class while I talked with the principal, nurse and school psychologist.  My son walked into the school as he was having these movements and continued to have them in the classroom.

I told the principal that they were not prepared to have my son in school. My son’s movements were extreme and he could potentially hurt himself while being at a desk.  Who was watching him as he walked in the hall and prevent him from hurting himself if the events should cause him to fall down?  Who is making sure he doesn’t poke himself with a pencil?  What are you going to do about the loudness of his yells?  How are you going to give him some privacy?  How are you going to handle the other students when these events happen?  My son’s vocalizations sounded like yells of pain?  Who is going to differentiate these movements from his actual epileptic seizures?  Soon, here came my son’s teacher along with my son.  She said that he could not be in class yet until they got a little more organized.  In the end I told the school I would obtain from our neuropsychologist recommendations for accommodation.  Once those items were in place we would re-convene coming to school.  Then we left.  The second reason for this decision was the school could not accommodate his ability to learn when he would have these non epileptic seizures for hours in the night, causing loss of sleep.  I needed to be able to teach him when he was capable of being taught.  The school did not understand that a young man can not learn while his body is jerking and he is uncontrollable yelling.  Or, he is not able to learn when he has only had two or three hours of sleep.

A couple of weeks later the school contacted me to review their plan and accommodations that they had in place for my son.  It included gradually getting him back into the routine of coming to school, starting out with an hour and slowly working up to full-time.  To compensate for the abbreviated school day they provided him with a tutor, which is where I made one of my mistakes.  The tutor they selected was his actual third grade teacher.  Later I found out that she was one of the reasons that was causing my son’s anxieties, which then triggered the non epileptic seizures.  They created a screened off area of the classroom where my son could go while he was having one of these events.  It gave him privacy and it contained a bean bag to provide some safety.  Finally they provided an aid that would accompany my son wherever he went.  This also turned out to be a big mistake.  The aid would say things implying my son was faking these seizures, which in turn triggered non epileptic seizures.  It was a vicious cycle.

In the end, my son finished the school year, but this event was the beginning of a continuous decline in his ability to learn in the public school setting.  My son is now in 7th grade and this year we decided to do homeschooling because the school could not accommodate for his needs and continue providing him a “productive” education.  The trigger that made me make this decision was that in 7th grade he was working on the same math that he had been working on in the 3rd grade.  They were not making any progress.  Meanwhile, I knew my son was a bright individual, especially toward math.  Before he even went to kindergarten he had figured out on his own the concept of addition and subtraction.

It is now 4 years later and my son is still having these events, but they have drastically decreased as a result of taking him out of school.  We have worked with neuropsychologist for the last 4 years with the goals of 1) identifying triggers for the events, 2)what to do when he has an event and 3)general lesson on how to reduce his anxiety.  This also included learning bio-feedback. While seeing this neuropsychologist, we identified the fact that my son was having a combination of epileptic seizures, non epileptic seizures and Tourette Syndrome.

One other topic that you may run into is P.A.N.D.A.S., which is an acronym for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections. When my son was young, from the ages of one to two, he had severe ear infections, which eventually led us to have tubes put in his ears, which completely eliminated the ear infections.  Later, I found out that when there were outbreaks of strep throat at school he didn’t get sick himself, but was a carrier of it which usually caused me to get strep throat.  Of course this is all theory on my part, but it is interesting that my son may have a relationship to P.A.N.D.A.S.

Hopefully this post helps with your understanding of non epileptic seizures.  I am including below some definitions of some of the term you may hear about with non epileptic seizures or with Tourette Syndrome.

Psychogenic non-epileptic seizures (PNES):  , also known as Non-Epileptic Attack Disorders, are events superficially resembling an epileptic seizure, but without the characteristic electrical discharges associated with epilepsy. Thus, PNES are regarded psychological in origin, and may be thought of as similar to conversion disorder. It is estimated that 20% of seizure patients seen at specialist epilepsy clinics have PNES.  The differential diagnosis of PNES firstly involves ruling out epilepsy as the cause of the seizure episodes, along with other organic causes of non-epileptic seizures, such as syncope, migraine, vertigo, and stroke, for example. However, it is important to note that between 10-30% of patients with PNES also have epilepsy. Frontal lobe seizures can be mistaken for PNES, though these tend to have shorter duration, stereotyped patterns of movements and occurrence during sleep.  The condition may also be referred to as non-epileptic attack disorder, functional seizures, or psychogenic non-epileptic seizures. Within DSM IV the attacks are classified as a somatoform disorder, whilst in ICD 10 the term dissociative convulsions, is used, classed as a conversion disorder.

Pseudoseizures or Hysterical Seizures:  While it is correct that a non-epileptic seizure may resemble an epileptic seizure, pseudo can also connote “false, fraudulent, or pretending to be something that it is not.” Non-epileptic seizures are not false, fraudulent, or produced under any sort of pretense.

Conversion disorder:  1.  A type of somatoform disorder in which unconscious psychological conflicts or other factors take the form of physical symptoms that are produced unintentionally.  2.  Somatoform disorder in which an individual presents sensory or motor symptoms that do not have a medical explanation

Somatoform disorder:  a mental disorder characterized by physical symptoms that suggest physical illness or injury – symptoms that cannot be explained fully by a general medical condition, direct effect of a substance, or attributable to another mental disorder (e.g. panic disorder). The symptoms that result from a somatoform disorder are due to mental factors. In people who have a somatoform disorder, medical test results are either normal or do not explain the person’s symptoms. Patients with this disorder often become worried about their health because the doctors are unable to find a cause for their health problems. This causes severe stress, due to preoccupations with the disorder that portrays an exaggerated belief about the severity of the disorder.  Symptoms are sometimes similar to those of other illnesses and may last for several years. Usually, the symptoms begin appearing during adolescence, and patients are diagnosed before the age of 25 years.  Somatoform disorders are not the result of conscious malingering (fabricating or exaggerating symptoms for secondary motives) or factitious disorders (deliberately producing, feigning, or exaggerating symptoms) – sufferers perceive their plight as real. Additionally, a somatoform disorder should not be confused with the more specific diagnosis of a somatization disorder. Mental disorders are treated separately from physiological or neurological disorders. Somatoform disorder is difficult to diagnose and treat since doing so requires psychiatrists to work with neurologists on patients with this disorder.  (Wikipedia)

P.A.N.D.A.S.:  an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. The term is used to describe a subset of children who have Obsessive Compulsive Disorder (OCD) and/or tic disorders such as Tourette’s Syndrome, and in whom symptoms worsen following strep. infections such as “Strep throat” and Scarlet Fever. The children usually have dramatic, “overnight” onset of symptoms, including motor or vocal tics, obsessions, and/or compulsions. In addition to these symptoms, children may also become moody, irritable or show concerns about separating from parents or loved ones. This abrupt onset is generally preceded by a Strep. throat infection. What is the mechanism behind this phenomenon? At present, it is unknown but researchers at the NIMH are pursuing a theory that the mechanism is similar to that of Rheumatic Fever, an autoimmune disorder triggered by strep. throat infections. In every bacterial infection, the body produces antibodies against the invading bacteria, and the antibodies help eliminate the bacteria from the body. However in Rheumatic Fever, the antibodies mistakenly recognize and “attack” the heart valves, joints, and/or certain parts of the brain. This phenomenon is called “molecular mimicry”, which means that proteins on the cell wall of the strep. bacteria are similar in some way to the proteins of the heart valve, joints, or brain. Because the antibodies set off an immune reaction which damages those tissues, the child with Rheumatic Fever can get heart disease (especially mitral valve regurgitation), arthritis, and/or abnormal movements known as Sydenham’s Chorea or St. Vitus Dance. In PANDAS, it is believed that something very similar to Sydenham’s Chorea occurs. One part of the brain that is affected in PANDAS is the Basal Ganglia, which is believed to be responsible for movement and behavior. Thus, the antibodies interact with the brain to cause tics and/or OCD, instead of Sydenham Chorea.  (information provided for by http://intramural.nimh.nih.gov/pdn/web.htm )

Tourette Syndrome in the News – Good or Bad

I am sure many of you have noticed the story about the 12 teenage girls in Leroy, New York who all have been having tic-like symptoms.  According to the news, this started out of the blue with all of the 12 girls.  This news story has been going on for over two months and  most recently hit the national news.

I will be honest with you that there needs to be more discussion about Tourette Syndrome (TS), but I am not sure if this news item is really doing those who struggle with Tourette Syndrome any justice.  The news sensationalism is starting to sound like the Salem witchcraft hunt.

I have seen videos of some of the girls and it does appear that they are having both movement and vocal tics.  According to the news there has been intensive investigations into this situation and it has been determined that they have not identified any specific environmental factors that may have triggered the phenomenon.  I think the CDC is also involved in the investigations.

Over the last two months the diagnosis has been referred to as being Tourette Syndrome.  Unfortunately that does not explain 12 different individuals experiencing TS at the same time.  Most recently, I see the diagnosis is changing from Tourette Syndrome to a diagnosis of conversion disorder. Conversion disorder, formerly known as hysteria,  is a neurosis marked by the appearance of physical symptoms such as partial loss of muscle function without physical cause but in the presence of psychological conflict. Symptoms include numbness, blindness, paralysis, or fits without a neurological cause. It is thought that these problems arise in response to difficulties in the patient’s life, and conversion is considered a psychiatric disorder in the Diagnostic and Statistical Manual of Mental Disorders 4th edition (DSM-IV). 

Conversion disorder can present with any motor or sensory symptom including any of the following:

• Weakness/paralysis of a limb or the entire body (hysterical paralysis or motor conversion disorders)
• Impaired vision (hysterical blindness) or impaired hearing
• Loss/disturbance of sensation
• Impairment or loss of speech (hysterical aphonia)
• Psychogenic non-epileptic seizures
• Fixed dystonia unlike normal dystonia^{[clarification needed]}
• Tremor, myoclonus or other movement disorders
• Gait problems (Astasia-abasia)
• Syncope (fainting)
• Hallucinations of a childish or fantastical nature  ^[1]

I don’t think this flip-flopping of the diagnosis is doing any benefit for those who have Tourette Syndrome.  To some extent, it is implying that Tourette Syndrome is psychological.  This misnomer has been a battle that every individual with Tourette Syndrome has faced. The big question: Is it real or is the individual purposely doing the tics?  If you have had any experience with TS, it is obvious that physiological that may be affected by psychological factors, such as anxiety.

This morning I saw two of the girls on a morning television show and they appeared to be frustrated because they knew no more today about what is wrong with the them than what they knew two months ago.  It almost sounded like if they had a specific diagnosis, it would imply that it could be treated and they would be cured.   When I heard this, I thought to myself, stand in line.

There are thousands of people in the United States, and all over the world, who would love to have some answers for Tourette Syndrome and have a cure for it.  From a research standpoint, it is my understanding that we are not even close to understanding Tourette Syndrome, let alone having a cure.

I am very glad there is discussion about Tourette Syndrome, but I wish it was more factual rather than being referenced with hysteria, or as a plague, or with conversion disorder.  I hope this does not negatively affect the funding for research for Tourette Syndrome.  We need research to continue and we need funding to do the research.  I am concerned that this flip-flopping of diagnosis is muddying the waters which could potentially affect people’s reaction to Tourette Syndrome.  To prevent this from happening, I think people need to talk about it more.  Get the facts out.  More importantly I expect a statement to be made by the Tourette Syndrome Foundation. I think it is best that we try to control the discussion, or at least add some credence to it. Instead, I hope this news story can turn into a positive. These 12 girls may provide a unique research study for evaluating Tourette Syndrome. Hopefully research teams can get involved and turn this news story into a benefit for Tourette Syndrome research.

You may ask why does this concern me so much.  My son has Tourette Syndrome, and at one time in his diagnosis stages conversion disorder was brought up. That was four years ago. Since then the doctors refer to his condition as Tourette Syndrome or non epileptic seizures (my son also has epilepsy). It depends on the type of tic being discussed.

Regardless of the label, Tourette Syndrome has put a heavy weight on my son’s life, and I don’t want some negative publicity making things worse than they already are.  Over the years the media has sensationalized Tourette Syndrome.  Tourette Syndrome patients were commonly seen as oddities on talk show stages.  I thought we had got beyond this.  Unfortunately the media loves sensationalism, and they are back at it.  See the following sensational headline, which references the plague.

For more information about the LeRoy incident see:  The ‘mysterious’ Tourette-like syndrome plaguing a N.Y. town

[1] Conversion Disorder, Wikipedia,  http://en.wikipedia.org/wiki/Conversion_disorder

Chronic Illness – Facing Grief

Having a child that has a chronic medical condition is challenging.  Dealing with the actual medical aspects and doctor appointments is one thing, but trying to reconcile the emotions associated with the situation is a whole new challenge.  My son has had epilepsy since he was 3 1/2, Tourette Syndrome since 2008, non-epileptic seizures and an anxiety disorder since third grade, and was diagnosed with Type 1 diabetes last year.  On top of all of this he has some learning disabilities. 

I sometimes wonder whether anyone understands what we are growing through.  Dealing with these medical issues is overwhelming.  With my son, you never know when a seizure is going to happen and you have to be in standby mode until it happens.  Then diabetes has turned a spotlight on him. It is there in your face, when you exercise, when you eat, when you drink and when you sleep. Always there, always present. 

We were also hit by another blow when it was determined my son had learning disabilities.  After five years, this is still a shock for me.  Both myself and my husband graduated from college.  I have a great career.  Both of us excelled at school.  For me school was easy and I had dreams for my son.  The learning disabilities pretty much destroyed those dreams.  It is not so much about the education. I knew my son was smart, but needed to learn things in a different way. My fear really was around quality of life. Life is not easy and education gives a slight advantage ahead of the masses. I wanted my son to have those advantages and possibly not struggle with life. I had to come to turns that my son’s life was going to be different from what I expected.  It was really hard getting my head around this.  I kept thinking he could get well and he could “catch up.” 

I often wonder what it would be like to not have to explain to my boss that I have to take my son to a doctor every other week, or that the school has called and I need to go pick your son up because he is having some medical issues, or that my son has had a really rough night and I need to stay home with him.  My boss hates this.  I even got on intermittent family medical leave, but he still hates it.  Every day I worry about whether he is going to get rid of me. 

As we have been going along this challenging journey, I thought about how you change depending upon where you are in the cycle of dealing with chronic medical illnesses.  It is almost like the stages of grief.  At first you go through denial.  When my son was first diagnosed with epilepsy, I was constantly doing research to identify how and why this happened.  It wasn’t until almost two years later when I realized it didn’t matter.  He had epilepsy and learning how this came about was not going to lead to a cure.  I also spent years going from one specialist to another, hoping one would have the magic answer that would put all of this in the past.  Yes, I was in total denial.  Rather than focussing on living life with epilepsy, I was stuck on researching the why’s and how’s, which was a useless endeavor. Even if I found out why and how, how was that information going to help the situation? We are still stuck treating the symptoms and mitigating their effect.  Each specialist we saw was just another flavor of the same thing.  We saw medical doctors at Children’s Hospital in Ohio, the Cleveland Clinic, Mayo Clinic, a New Jersey specialist in movement disorders, and lastly an Epilepsy Clinic in Minnesota.

I also went through a period of anger.  I didn’t understand why doctors couldn’t first of all make a diagnosis and secondly determine a treatment.  We were stuck in this trial and error mode while we were trying to find the right anti-epileptic drugs that would have a positive affect, and reduce or end my son’s seizures.  It was frustrating.  They were the experts.  Later, it was even more frustrating when I couldn’t get a neurologist to look at the whole picture of my son’s medical condition.  There were so many things happening and they would just react to one symptom or another.

We have also sought spiritual guidance with this situation.  We have worked with pastors from several churches from around the world.  Everyone was praying, praying for a cure.  Looking back, I think we should have been praying for a life, a life with medical issues, but a life of living, rather than grieving.

Parents and children also can get caught in a state of depression.  At times nothing seems to be good happening.  Your thoughts go to “why me.”  My son will beg me to make it all go away.  I don’t think we are quite through this stage of grief.  These medical conditions have engulfed our life.  I am always telling my son to look toward those things that are good in his life.  Think about those moments that bring happiness.  Sometimes, one gets so focussed on the bad, that it is hard to see the good.  I haven’t quite figured how to get unstuck from this stage.  Talking to other people doesn’t seem to help; it is just another reminder of the problem.  When there is a medical condition that reminds you of its existence every moment of your life, it is hard to get away from it.  For my son it includes taking his medications for epilepsy, testing his blood seven or eight times a day to check his glucose levels, avoiding those situations which trigger his tics, and then if they do happen constantly trying to suppress them.  It is stressful.  It is tiring.

I look forward to the time when both myself and my son reach acceptance.  We recently decided to take control of his education and made the decision to home school.  Perhaps this step toward homeschooling is the first step of acceptance.  We know it will take hard work.  We also know that we will do it together which will strengthen our bond.  We now have control.  We can do what his school could not do.  We can pursue education when he is fit to be educated.  I could also mold his education around his needs.  We could also focus on his talents and I think we will find his abilities are far beyond what the schools had pigeon-holed him as.  I also think we will have many opportunities to experience joy while we are on this journey. 

So, dealing with chronic illness can affect every member of the family.  The effects can follow the stages of grief. Denial.  Anger. Depression.  Acceptance.  Both the child with the chronic illness and the child’s caretakers go through each of these stages.  I also suspect that these stages recur as you fight the challenges of the chronic illnesses.  It is true one may reach the state of acceptance, but I am quite sure something will happen and one will be thrown back into that mode of denial, and so forth.

I think understanding that this is happening is probably the best way of getting through this.  By having an understanding, one will know that how one feels is perfectly normal.  It is expected that you would feel the way you do.  It is what makes us human.

A new specialist for Tourette Syndrome . . .

This is a follow-up to my blog post called Tourette Syndrome, in search for help . . .  Read on if you want to know what life is like when your child has Tourette Syndrome and you are desperate to find help.  In my previous post I described the doctors we had been working with and getting no positive results.  I also described this push by the school to get my son medicated.  I  talked about the medications we tried.  Finally I went on a search for a specialist that worked specifically with children that had Tourette Syndrome and who would look at the full picture of my son’s well-being.

As I said in the earlier post, I found a doctor pretty much by accident and we had to wait five months for our appointment.  Finally the appointment day arrived.  On the way to the appointment, my son was frustrated and didn’t want to go.  He was tired of doctors and he didn’t want to talk about his tics.  So we had a little fight as we drove to the doctor appointment.

Finally we arrive and get through the paperwork with the receptionist and then were escorted to a waiting room.  There were only two other people in the waiting room, a father and a son.  Soon, an elderly, short man entered the waiting room.  His hair was  gray and pulled back into a  pony tail.  Plus he had a gray, long beard.  A little like Dumbledore.   Immediately upon seeing him, I thought to myself, what an odd little character.  Suddenly he said my son’s name.  I was a little shocked.  This was our doctor.  This was Doctor D who was a specialist that we hoped would help us.  Definitely non-traditional.  Definitely not what we are used to in the stuffy world of neurologists.

Doctor D is the  Director of the Developmental-Behavioral Pediatrics Program and Clinical Director of the Developmental-Behavioral Pediatrics Clinic. In addition he is a Professor in the Department of Pediatrics and has a joint appointment as Professor in the Department of Family Practice & Community Health. He is Board Certified by the American Board of Pediatrics and by the American Board of Medical Hypnosis.

I later found out that his research interests include exploration of cyberphysiologic (self-regulatory) abilities in children and adolescents with headaches, Tourette Syndrome, children with sleep disorders, and in the ability of children to learn and use self-hypnosis to alter and regulate physiologic functions.  His bio said:

As an advocate for children and youth who live in families in communities I have an abiding faith in children’s ability to develop and cultivate skills in self-regulation and participate actively in their care toward promoting and maintaining optimum health. I believe in children and their families, and listen carefully to what children say and how they say it to best understand how I can help them and their family to help themselves. Most children and teens (and their parents) are pleasantly surprised to discover that they can learn self-regulation methods that can help them often dramatically with a wide variety of problems, from managing every day stress, to reducing/eliminating pain, to coping with repetitive procedures, managing fears and other forms of anxiety, eliminating habits.

Dr D led us to his large office, which was full of soft chairs and couches arranged comfortable and it didn’t feel clinical.  There was also a table full of 70s and 80s toy memorabilia.  The discussion immediately started with jokes from the doctor.  In fact the joking never stopped throughout our appointment.  He spent the hour talking directly with my son, with an attempt to have my son describe what was going on and to get comfortable talking to him.  Occasionally, he would turn to me for clarification or for confirmation.  One of the rules he told my son was, in our future appointments there were two words that were not allowed.  The words were try and can’t.  He told my son instead we would be using the word do.  Basically ‘Just Do It’, which he claimed was his slogan and Nike didn’t pay him a dime for it.  More humor.    Throughout the appointment he would test my son during the conversation to see if he would use those words.  Interestingly, my son caught himself every time just before he would have used one of those words.  The doctor commented that my son caught on quickly.

The majority of the conversation was the doctor asking my son questions about what kind of tics he had.  I was surprised to learn that my son had a hard time describing them.  Initially he said his whole body felt tight and that it hurt.  The doctor asked him what other ‘kinds’ of tics did he have.  My son responded questionably, “There are different kinds of tics?”  With a little reminder he started remember some of the movement tics he had and the vocal tics he had.

Toward the end of the appointment the doctor told my son that he could guarantee that he could reduce the number of tics my son was having and the intensity of the tics.  I was a surprised when he said this.  I don’t think I have ever heard a doctor use the word guarantee.  The doctor also asked if my son was anxious taking his shots for his insulin.  We described that my son had a real hard time changing his inset for his pump which was administered with a needle into the body.  The doctor said he could teach my son so that he will not even feel the needles. I addition the doctor talked about my son’s inability to fall asleep without taking melatonin.  He said he could teach my son to fall asleep and would no longer need the melatonin.

The appointment concluded with a confirmation that our next appointment was in two weeks and that the doctor would be showing my son and myself a video to explain what he was going to do.  And that was it.  That was our appointment with this new doctor who appeared to be an expert at hypnotism and teaching children self-hypnosis.  I was excited.  He recognized that my son was dealing with a lot of medical issues and that there is anxiety and stress associated with having these medical problems.  As we left the appointment heading to the car my son, with a smile on his face, said, “He is a really good doctor.  I really like him.  He is a hippy.  Kind of like you.”  I laughed and couldn’t wait for our next appointment.  We were headed for a new adventure.

To Be Continued . . .